Columns

I’m grateful for the International Hypopara Conference

The week after the International Hypoparathyroidism Conference is always bittersweet. I’m so thankful I got to spend several days reconnecting with friends, sharing updates on my socials, hearing from hypoparathyroidism researchers and experts, and learning where clinical trials and therapies are in the pipeline. It’s also exhausting and…

This week, I’ll be reconnecting with my hypopara community

When I was diagnosed with hypoparathyroidism at age 18, knowing where to go to find information or how to connect with other patients was a big problem. My general practitioners often didn’t have the expertise in my disease or time to help, and usually explained my symptoms away as…

The silent struggle of hiding my hypoparathyroidism

“I’m used to being judged. I know what that feels like.” — NASCAR driver Michael Waltrip Hypoparathyroidism is an invisible illness. I appear healthy, but I struggle to exercise and become dizzy from low blood pressure. I easily forget things and sometimes can’t remember what I was saying…

An appointment to clean my teeth leads to a chance to clear the air

It’s easy to forget that not every medical practitioner understands how hypoparathyroidism affects my life. My rare disease is just a footnote at my biannual or annual appointments; unless it’s actively causing a concerning symptom, I sometimes don’t even mention it. My eye doctor knows hypoparathyroidism, also known as…

A year of loss and grief, and a fresh outlook on life

“Grief is the price we pay for love.” — Queen Elizabeth II Today marks a year since my dog, Princess Leia, died. A coton de tulear, Leia was a cute, little, white ball of fluff.  She was by my side from the moment I picked her up, Super…

Tips for managing burnout from so many doctor appointments

I often wonder how many hours a year I spend in waiting rooms. I’ve been avoiding doing the math, but part of me wants to know. Because of my hypoparathyroidism and multiple comorbidities, I go to two to five medical appointments a week. An average of 3.5 appointments a…